Mom at center of ‘wrongful birth’ debate: If lawmakers cared, they would have called

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CYPRESS, Texas — Dortha Biggs enters through the front door and rushes to greet her daughter, Lesli, who sits in a recliner, curled in fetal position.

Mother and daughter lock hands and begin a ritualistic rubbing of hands, the only way they can communicate. It’s rhythmic and intimate, beautiful and heartbreaking. Lesli squeals as her mother holds her right hand and pats her left.

A smile starts to radiate from Lesli’s face.

“Looka there,” Dortha says. “Are you going to smile? Can you smile? There’s that smile!”

Ever since Lesli was born 48 years ago, Dortha has longed to hear her daughter say a single word. She cried more tears than anyone can imagine, rocking young Lesli every night for years on end. Mom would get maybe an hour or two of sleep before heading off to her teaching job.

“Because you just care so much,” Dortha says.

Dortha contracted rubella when she was 2½ weeks pregnant, before she even knew that she was expecting. Although she got better, the virus took root in her fetus’ bone cells, nerve cells and skin cells. It would leave Lesli blind, deaf and severely brain-damaged. She spent 100 days in the hospital before her first birthday and has undergone more than 20 surgeries over the years, including an open-heart operation at 3 months that left her ribs broken.

Lesli has lived in a Houston-area group home since 2000. Dortha, 77, now lives in Oklahoma and visits as often as she can, about eight times a year. As the two hold hands, Dortha ponders whether her daughter knows who she is.

“I don’t think she’s aware that I’m her mother,” she says. “I think she is aware that I’m someone special who cares about her.”

It’s been a grueling journey for both. Mom yearns for the one thing that is unattainable: for Lesli to get better or just to enjoy the simplicities of life. Lesli lives in a dark, silent, isolated world in her group home, unable to communicate with her mother beyond touch.

Four decades earlier, mother and daughter made headlines when the Texas Supreme Court issued a landmark ruling. Dortha had sued her doctor, accusing him of failing to diagnose the rubella. If she’d known, she would have had an abortion.

On Feb. 19, 1975 — three years after Roe v. Wade — about 60 women filed into the Supreme Court chamber in unison and took up seats in support of Dortha’s case. The women heard a decision that stunned the legal community and reversed lower court rulings that had sided with the doctor.

The high court’s ruling set a precedent that said a woman could sue her doctor for a “wrongful birth.”

Dortha, who stayed home, learned of the ruling through the news.

This year, the news brought Dortha another shock: A Texas state senator had introduced a bill that would ban such lawsuits — in essence, overturning the precedent she helped set. And he invoked her case, saying wrongful birth lawsuits such as hers promoted abortion.

“The presence of a disability in a child should not be grounds for a lawsuit,” Sen. Brandon Creighton told his colleagues. “It sends the message that there are births that are wrongful. There are no wrongful births.”

Dortha was outraged.

Never once did a lawmaker reach out to her. Never was she asked to testify in committee hearings. Never did they ask about Lesli.

If they had, she would have told them of the pain her daughter has suffered since she was born March 8, 1969, in Wichita Falls, Texas. Of traveling more than 100,000 miles to hospitals in Dallas, Baltimore, Washington and San Francisco — anything to give her little Lesli the best shot in life.

“If you have not watched your daughter suffer pain — pain that was just hell — for days and days,” Dortha says, “you cannot even grasp the pain that you experience.”

She’d have told those under the Capitol dome how she dedicated her life to special needs children for more than 30 years. Of designing the curriculum for disabled children in public schools, first in Dallas and then in Wichita Falls.

Tormented by the virus that wrecked her child, she wrote her master’s thesis on rubella and its devastating effects in pregnancy.

Many nights, Dortha weeps.

“I would have given anything to have never been born,” she says. “Because had I not been born, she would not have been born and suffered this.”

A legal legacy

Dortha is like a hawk, making sure Lesli’s hair is cut short so she won’t yank it out, checking to make sure her wheelchair works and monitoring the cleanliness of her bedroom.

The day after her visit, a scene reminiscent of the 1975 Texas Supreme Court ruling played out across the state in Austin.

More than a dozen women dressed in long red robes and white bonnets sat in the chamber of the Texas Senate, their outfits matching characters from “The Handmaid’s Tale,” the popular dystopian novel that explores themes of power, gender and religion in politics.

They were there to protest two anti-abortion measures, including the bill that would undo Dortha’s legal legacy.

It’s a saga that began in the summer of 1968. Deposition transcripts tell the story:

Dortha had fallen ill with “nausea, shivering attacks, cramping of the stomach” during a July Fourth trip with her husband to Port Aransas on the Texas coast.

A pinpoint rash broke out across the top of her face and eventually extended “downward to other portions” of her body, including her legs.

The possibility of being pregnant was the last thing on her mind. She was 28 and on birth control. She had a son and had planned to have a second child sometime down the road.

She spoke by phone with Dr. Louis M. Theimer, the well-regarded family practitioner in Wichita Falls who opened his practice in 1953 and delivered hundreds, if not thousands, of the town’s babies. He’d delivered Dortha’s first child, Jake, on Dec. 24, 1961.

Theimer had seen her just before the trip. She wasn’t feeling well then, but she told him she was feeling much worse now.

She first saw a doctor in Port Aransas and was given antibiotics. When she returned home, she was still ill. She saw Theimer on July 11, 1968. He believed she might be pregnant and ran a test. She mentioned that she had a rash on her vacation but didn’t ask about the possibility of rubella, also known as German measles — at least not yet.

Four days later, Dortha returned and was informed that she was indeed pregnant. She broke down, fearing that the rash was rubella and that her fetus would be harmed.

It was the summer of 1968. A rubella epidemic had swept across the United States from 1963 to 1965. The diagnosis during pregnancy was a deep fear among any expectant mother, similar to how Zika took hold in Central and South America last summer. Rubella was known to cause deafness, blindness, heart disease, neuromuscular tightness, seizures and extreme intellectual disabilities. If the mother got rubella in the first two months of pregnancy, it was known to be especially debilitating, continuing to live in the child long after birth.

“I was alarmed,” Dortha testified. “He told me the test was positive and I was pregnant.”

“I said … ‘Could this rash that I had have been measles?’ And his statement was, ‘No, if you hadn’t had measles (as a child), you would have had them in the ’64-’65 epidemic.’ ”

In his deposition, Theimer equivocated when asked about that conversation but acknowledged that he believed her rash was from an antibiotic, not rubella.

Three times during her pregnancy, Dortha’s body tried to spontaneously abort. Believing her child to be healthy, each time she agreed for shots to be administered to stop her contractions and save the fetus.

“After I was told I did not have rubella, I very definitely wanted the baby,” she testified.

And what would she have done if she’d been informed that she had rubella?

“I would have done the kindest thing that I could have known to have done for her,” Dortha said, “and that would have been to terminate the pregnancy.”

Abortions were illegal in Texas at the time. She said she would’ve traveled to Colorado for the procedure.

Theimer acknowledged that he never ran a test on Dortha to determine the presence of rubella antibodies. “No, I never did,” he said.

A Christian, the doctor said he had no religious scruples against abortion. He added that he would inform patients if he believed they have “a possibility of having a deformed fetus.”

“That’s what I tell them, but I think the choice after that is theirs,” Theimer said.

“I agree with you. That’s the whole case,” Dortha’s attorney shot back. “Doctor, did you give this patient of yours that choice medically?”

“No,” he said. “I didn’t think she ever had rubella.”

‘No right to judge’

It’s those words that still haunt, still sting. Time has not healed the wounds of the doctor’s misdiagnosis.

“Now, they’re punishing me again,” she says of the legislation at the state Capitol.

The fact that Creighton, the bill’s author, implied that people like her were just looking for a payout, she says, is “beyond insulting.” Creighton also argued that the mere threat of wrongful birth suits kept the best doctors from setting up practice in Texas and could lead to a shortage.

To this, Dortha says, “Despicable.”

“It would’ve been nice if they’d just contacted me.”

Infuriated at the news of the measure, her fingers clapped at her keyboard as she typed a letter to Creighton.

“I have stood over her bed for hundreds of nights watching her suffering,” she wrote. “If you have not experienced this heartbreak, you have no right to judge.”

After the Supreme Court ruling, her family received about $120,000 in a settlement reached with Theimer — money that was placed in a special needs trust for Lesli. At the time, the family owed $21,472 in medical bills. Back then, Dortha made just $4,200 a year as a teacher.

After the suit, she was forced to move from Wichita Falls to Dallas because doctors back home refused to treat her two children. Her marriage to Lesli’s father didn’t survive the move.

Dortha has left the money in the trust mostly untouched in recent years, preferring to pay Lesli’s out-of-pocket costs with her own money. It’s a burden she’s more than willing to take on. That way, there is money left for Lesli’s care long after Mom is gone.

Dortha keeps a yellow scrapbook called “The First Six Years.” The first page announces Lesli’s birth, hailing the 6-pound, 10½-ounce girl. Next to it, a black-and-white photograph shows Lesli with her mouth open and both fists clenched.

Memories burst from the album’s pages. Lesli’s 7-year-old brother, Jake, beams on the couch, his little sister in his arms. On her 4th birthday, Lesli sits in front of a giant cake shaped like a teddy bear.

The message below, like others in the scrapbook, is in Lesli’s voice, written as her mother imagined it: “I have now learned to sit alone, and in four more months, I will crawl. My teachers worked on helping me sit for over three years.”

Turn the page. Lesli is sprawled out, crawling. “I no longer have to just lie where someone places me.”

But there are sobering reminders, too.

“At one time, I took over 40 medications daily.”

“If only you could hear me long enough to say, ‘I love you.’ ”

On the back page is a final note, which Dortha reads in a soft, hushed Texas twang.

“This has been the story of my first 6 years. I have brought a new kind of love and strength into the lives of many,” she reads.

“I have fought hard and suffered to live. Very few days of my life are without pain, but still I smile.”

Mom closes the book and uses tissue to dab her eyes.

“I did try for so long to think that things would be a lot better, and then you start accepting,” she says. “You have to learn to accept that some things are going to just be.”

Dortha accepted that the milestones would become few and far between. Lesli would never learn to stand on her own. She would never speak. She would never hear her mom’s words: “I love you.”

Who gets to decide?

Lesli sits in a wheelchair in her room, her head hunched over. She sports a crew cut. If her hair grows out much more than an inch, she’ll pull it out. One of her eyes was removed due to cataracts. Her other is so deteriorated, it’s hard to tell whether it’s even there.

Her group home sits in a cul-de-sac in Cypress, Texas, about 25 miles northwest of Houston. The spacious three-bedroom brick home with wood siding blends in well with the four residential homes on the street. The only thing that distinguishes the house is the specialty van with wheelchair access in the driveway.

It’s a home she shares with five others, all of whom receive round-the-clock care.

The letters L-E-S-L-I gaze down from the wall above her bed. Next to them rests a cowboy hat.

Dortha rubs her daughter’s right hand. Dortha’s husband of 32 years, Tom Biggs, runs his fingers back and forth across the back of her neck. Dortha decided he was a keeper when he didn’t cut and run like most guys upon seeing the severity of Lesli’s disabilities.

“He has patted hands as many hours as I have,” she says.

Dortha never gave birth to another child. Shortly after Lesli was born, she was told that her baby was perfect. She had her tubes tied three days later. The following week, Dortha spotted cataracts in her daughter’s eyes, the start of the arduous journey they’re still traveling.

Standing over her daughter, Dortha has a message for the senator who drafted the bill. “Senator Creighton has not stood where I have stood or walked in my shoes. He has not,” she says. “He has not stood and watched a child suffer like this.”

She says it’s interesting that the current administration in Washington, as well as Texas lawmakers, wants to deregulate everything from the EPA to banks to businesses. “But when it comes to the most intimate decisions an individual has to make, it’s ‘let’s put more regulations on that.’

“I’m the one who should have made the decision.”

Does she still wish her daughter had never been born?

“Yes,” she says.

Holding her daughter’s right hand, Dortha chokes up. Lesli places her mother’s right hand on the back of her neck. Mom strokes her daughter’s head. Tom rubs Lesli’s left arm.

Mom continues talking through her tears: “Because I have had the joy of loving her, but I’ve had the sorrow of watching her suffer. She has suffered so much of her life. If she could have come through the suffering and come through it and be able to enjoy her life more, I think it would have been a different issue.”

Mother and daughter now hold hands. Lesli moans. “But, no, I could never have said I want her to experience this — just to be born. Anyone who would say they thought that was the right thing to do has not stood and watched a child suffer like this.”

She understands that those words in her daughter’s presence might come across as cruel or twisted, but she reiterates that it’s for the love of her daughter and the freedom from her pain that she wishes she’d had an abortion or allowed her body to abort naturally.

“I could never have made the choice to have terminated the pregnancy for me or the hardships that it would bring on me,” she says. “But I could have in a heartbeat for her — knowing what she was going to go through.'”

‘The wrong message’

More than a dozen specialty vans line up about 8:30 a.m. at a community center about 15 minutes from Lesli’s home. It’s on the grounds of the faith-based nonprofit that runs Lesli’s home and several others in the surrounding area.

Every weekday, about 70 residents from the various group homes are driven to the center for specialized treatment.

It’s the first day of spring, and the Texas heat is already suffocating, pushing 80 degrees.

Lesli is helped from her van in her wheelchair and escorted into a cavernous building with polished floors. She comes here for therapy and worship.

Once in class, Lesli takes up a seat in a beige recliner and relaxes. Class leader Catherine Konneh brings over bean bags and rubber balls so she can feel them. Lesli pushes them away.

Konneh tries a variety of scents to arouse her olfactory senses. Lesli holds her nose over the smell of strawberry and takes in the aroma.

Konneh’s goal for Lesli is to someday wash her hands on her own. “I keep (the residents) active,” she says, “so that whatever skills they have, they won’t lose them.”

Next, everyone moves to the fellowship hall, where therapy dogs greet the crowd. Lesli seems more interested in the touch of the dog handlers than the dogs. She grabs the trainers’ hands and places them on the back of her neck. When a fluffy white dog named Lammie licks her face, she backs up her wheelchair.

But a black pooch named Omri makes a breakthrough. Omri places one paw on her leg, and she pets him with the help of the handler.

By early afternoon, Lesli, Dortha and Tom meet with staff for her annual review, going over her care for the upcoming year. The severity of her disabilities are rattled off: blind, deaf, cerebral palsy, allergies, seizure disorder, autism.

Even the most minute details are covered. All tags on her shirts must be cut off because they annoy her. Her wheelchair footrest must be down at all times to keep her from falling. Pay attention to her picking at her underwear. She prefers hot lunches, preferably noodles with no MSG.

Lesli moans through much of the session and plays with Konneh’s hands while Mom listens.

Her care for the upcoming year will cost about $200,000. Medicare and Medicaid will cover most of it.

More than two hours away in Austin, state senators take up the wrongful birth bill.

Dressed in a navy suit and light blue tie, Creighton stands on the floor and tells his colleagues that Senate Bill 25 prohibits “patients from suing their physician for lifelong payments, claiming that they would not have had their baby had they known different information. It removes the wrongful birth cause of action.”

He says doctors currently are “overcautiously suggesting termination in order to protect themselves.”

Democratic Sen. Jose Rodriguez of El Paso pushes back, saying the current law exists to protect women like Dortha and remains relevant even today. He said the Texas Supreme Court found that the doctor “had failed to carry out his obligation of fully informing the patient.”

“It’s about ultimately the woman’s right to receive accurate information from her doctor, so she can make an informed choice,” Rodriguez says.

The bill sails through. It must now go before the House for final approval.

Creighton soaks in the moment not too long after the vote. He tells CNN Senior Medical Correspondent Elizabeth Cohen that it is time for the “archaic 40-year-old cause of action” to go away.

“It just sends the wrong message,” he says. “It sends a message that the best physicians in America should not practice in Texas because … you have to consider that you could be held liable just for doing your job correctly.”

Told that’s not true — and certainly not what happened in Dortha’s case — Creighton insists that he’s correct because lawyers are clever and “you can be sued for anything.”

Asked why he never contacted Dortha, he offers several answers. First, he says it’s because of privacy concerns — even though he brought her case into the fight. Then, he says he can’t contact everyone from past cases about new legislation. He says he plans to respond to her letter but hasn’t had time. He says he hopes to meet her one day.

He says he was especially moved by her “exceptional” letter. “I’m very, very proud of her, almost to a heroic standpoint, just what it takes to raise a child and the challenges in disabilities.”

Legal experts say wrongful birth suits are rarely filed and certainly don’t scare doctors from opening up practice in Texas. One former director of the Texas Medical Board told a Senate panel that her agency had investigated only five wrongful birth cases since 1975, according to Courthouse News Service.

And while Creighton maintains that an expectant mother who is given a wrong diagnosis during pregnancy would still have other means to pursue a lawsuit, legal scholars say that is not true.

If you take away the wrongful birth cause of action, “there is no other action,” said George Annas, director of the Center for Health Law, Ethics & Human Rights at Boston University.

“What this guy doesn’t like is making a decision to terminate a pregnancy,” Annas said. “He doesn’t want you to do that.”

That motivation was on display just before Creighton answered CNN’s questions. A lawmaker stopped by and slapped him on the back: “Congratulations, you’re the only senator who’s gotten a pro-life bill through this session.”

The irony, Dortha says, is that the first thing to go when GOP-led legislatures begin slashing budgets is money for programs serving the special-needs and mentally ill communities. Put more precisely, she says, they care only when a child is in the womb, not after.

“They don’t love my daughter. They don’t know my daughter,” she says.

If they cared, she says, they would have contacted her. They would have toured her daughter’s group home. They would have held Lesli’s hand.